Annual Report 1999

Annual Reports

Preface

The period covered in this report has been another year of outreach and growth for Alzheimer Europe, but at the same time, a time of financial instability casting a question mark on the long-term security of the organisation.

Alzheimer Europe has started the successful dissemination of the results of its previously finalised European projects, such as the European Care Manual, available in 6 European languages, and the Children’s book, which the organisation developed, in close co-operation with the Luxembourg Alzheimer association. The visibility of the organisation has thus been significantly increased in the past year.

The recognition of the representativity and the European character of the organisations have similarly been enhanced, since Alzheimer Europe has been granted consultative status with the Council of Europe and has been accepted as a full member of the European Platform of Social NGOs.

Our contacts with the different services of the European Commission continue to be excellent, with two contracts (Lawnet and Disability) having come to an end in 1999 and the Directorate General for Social Affairs having agreed to financially support the development of European guidelines for the promotion of the rights of people with dementia. Our heartfelt thanks go to the different Commission representatives, who continue to generously support the activities of Alzheimer Europe and without whose aid, most of the activities described in this Annual Report would have been impossible to finance.

In 1999, we were also able to host the 1st Alzheimer Europe Forum in the European Parliament. This event was dedicated to “The Future of Alzheimer’s disease and dementia in Europe – Hopes and fears about the development of new anti-dementia drugs” and allowed us to improve our already existing relationship with Members of the European Parliament and to increase the awareness of the European Parliament in this important field. In this respect, I wanted to thank the financial support of Hoechst Marion Roussel, Pfizer Europe and Janssen-Cilag which allowed us to organise this important meeting.

Yet despite the growing recognition and ever expanding activities of our organisation, I cannot end this Annual Report without raising the thorny issue of the financial situation of Alzheimer Europe. The significant budget deficit and the shrinking reserves of the organisations force the organisation to reconsider its financial strategy and to develop new avenues to diversify its sources for funding.

The year 2000 will therefore be an important stage in the development of Alzheimer Europe, as we will need to make full use of new and exciting opportunities. With the support of our dedicated staff, our active member organisations and the new partnerships with the European institutions and the pharmaceutical industry and other corporate sponsors, I am confident though that 2000 will be a new time of growth for the organisation.

Jeannot KreckéChairperson

European projects

As in the past years, Alzheimer Europe has been active in developing projects which could be carried out with the support of the European Commission. In this respect, we were happy to receive funding under three different programmes in 1999, namely:

Actions in favour of people suffering from neurodegenerative diseases, more particularly

Alzheimer type (DAT) and related disorders, and their (informal) carers;

Support for representative European co-ordination organisations active in the field of equal opportunities for disabled people;

Preparatory measures combating and preventing discrimination.

Care Manual

While the writing of a European Care Manual and its translation into the eleven official languages of the European Union were finalised in 1998, the important question of the dissemination of the results had yet to be solved. We were therefore particularly pleased to see the efforts of our member organisations in having this practical guide for carers published in a number of languages in 1999.

Thus this Alzheimer Europe publication has been successfully launched in Danish, German, Greek, Italian, Portuguese and Turkish and has constituted an important tool for the concerned member organisations in raising awareness of the disease and in promoting best practice in the field of caring at home.

Lawnet

1999 also saw the end of the Alzheimer Europe Lawnet project which consisted in carrying out a survey of the various laws affecting people with dementia and their carers in the 15 Member States of the European Union.

An extensive inventory of the existing legislation was carried out and all the relevant laws were translated into English. The main areas of the study concerned:

The various systems of substitute decision-making for people with dementia (such as guardianship, curatorship or powers of attorney);

Restrictions of a person’s freedom of movement (such as forced internment, coercive measures, withdrawal of a person’s driving licence);

Bioethical issues such as consent to treatment and research, disclosure of a diagnosis of Alzheimer’s disease, advance directives and end-of-life decisions.

Thanks to the extensive inventory of legislation, Alzheimer Europe was able to produce 16 national reports depicting the legal situation in the countries covered by the study. Due to the different legal systems in the United Kingdom, two reports had to be drafted, one covering England and Wales, the other one covering Scotland. Also, the final report constitutes a first attempt at comparing and analysing the different systems in Europe.

While finalising the report for the European Commission, Alzheimer Europe became aware of the importance of the various subjects covered by the project and it was decided to ask for continued funding for the second phase of the project. Thanks to the support of the Commission programme of preparatory measures combating and preventing discrimination, Alzheimer Europe was able to start in November 1999, the elaboration of European guidelines to promote the rights of people with dementia and their carers. Experts from Austria, Finland, Greece, Luxembourg, Portugal, Spain and the United Kingdom (Scotland), as well as representatives of the Council of Europe take an active part in the drafting of these recommendations, which will be published in 2000.

Intranet

Alzheimer Europe is currently in the process of linking all its member organisations through a comprehensive and easy-to-use Intranet. The Intranet prototype was extensively tested with experts from some of the member organisations of Alzheimer Europe, in particular Finland, Germany, Luxembourg, Netherlands, Romania and the United Kingdom (England).

The main sections of the Intranet which have been set up and which should improve the exchange of information between national member organisations are:

A common database on publications and other information material (videos, audiotapes, slides, etc…

A database of the member organisations of Alzheimer Europe with their contact details

Various discussion forums which allow representatives of national associations to exchange information

A chat forum offering a real-time and direct way of communication

A database of upcoming Alzheimer Europe meetings and other conferences and seminars in the field of Alzheimer’s disease and related disorders.

Thanks to the security offered by the system, it will not only be able for national associations to consult the various databases, but to update and add to the existing data, thus creating a “common memory” of all relevant information for people with dementia and their carers.

Due to the extensive work necessary in setting up such a system, the Intranet will only be made fully accessible in 2000 after the various functionalities have been fully implemented and tested.

Disability

In 1998, Alzheimer Europe received the support of the European Commission as a representative European co-ordination organisation active in the field of equal opportunities for disabled people. The grant received by the European Commission covered the activities of the organisation from 1 November 1999 till 31 October 1999.

In particular, the grant allowed the organisation to expand some of its co-ordination activities and to fully consult its member organisations on such issues as the future priorities and the financial strategy of the organisation.

Equally the grant of the European Commission allowed the organisation to organise three Board meetings in 1999 and to give the members of the Board a better opportunity to take an active part in the running and management of the organisation.

Finally, the public image of the organisation was greatly enhanced by the publication of a quarterly newsletter highlighting relevant European developments of interest to Alzheimer associations.

Other projects

Children’s book in co-operation with Association Luxembourg Alzheimer

In close co-operation with the Luxembourg Alzheimer association, Alzheimer Europe drafted a book for children aged 8 to 11. It is aimed at helping children, often the forgotten victims during family crises, to come to terms with and understand more about Alzheimer’s disease. As the book is intended for a young audience, it was written and presented in a style, which ensured that it is accessible and easily understandable.

For World Alzheimer’s Day (21 September 1999), Alzheimer Europe provided a number of interested member organisations (Austria, Belgium, France, Greece, Italy, Luxembourg and Switzerland) with a significant number of these books which proved highly successful in reaching a new age group and in promoting awareness of the impact of Alzheimer’s disease.

Furthermore, we were particularly happy with the fact that the Luxembourg Ministry of Education provided the book free of charge to all children in the target age group, thus in effect integrating information about dementia in the school curriculum.

European Institute of Women’s Health

Alzheimer Europe participated in the REMIND (Research effort to maximise information on neurodegenerative diseases) project of the European Institute of Women’s Health in Dublin. As part of its contribution, Alzheimer Europe contributed a national report on the service provision in Luxembourg.

The report “Dementia Care: Challenges for an Ageing Europe” was presented at the European Institute’s Conference on 22 March 1999.

University of Glamorgan

Alzheimer Europe took part in a project of the Welsh Institute for Health and Social Care of the University of Glamorgan. This study brought together representatives of various research projects in an attempt to synthesise the emerging data.

As part of the project, a report was completed which draws attention to the relative strengths and weaknesses in developments affecting people with dementia and the areas where greater co-operation may be required.

Based on its experience of the Lawnet project, Alzheimer Europe was in charge of a specific chapter of this report looking into the legal and ethical issues of importance to people with dementia and their carers. The report is due to be published in 2000.

Council of Europe

The initial contacts with various departments of the Council of Europe established in 1998 led to an important development in the growing recognition of Alzheimer Europe as a representative pan-European organisation. Thus, in 1999, Alzheimer Europe was granted consultative status as an NGO by the Council of Europe and as such will be integrated more closely in the consultation process established by a large number of Council of Europe departments.

In particular, Alzheimer Europe will be able to further develop its contacts with the Directorate for legal affairs, the Working Party on Psychiatry and Human Rights, the Working Party on Incapacitated Adults and the Steering Committee on Bioethics.

Due to these good contacts, representatives of the Council of Europe have been actively involved in the different meetings organised by Alzheimer Europe in the framework of its Lawnet project and could inform the member organisations of Alzheimer Europe of relevant developments within the Council of Europe.

Networking

As in previous years, Alzheimer Europe has enlarged its co-operation with other European organisations active in the field of ageing, disability, social integration, public health or non-discrimination. The list of these organisations is too long to give here, but apart from the organisations described in more detail later, we would like to underline the continuing good relationships with the European Disability Forum, the European Public Health Alliance and EurolinkAge, with which Alzheimer Europe co-operates as a full member.

Alzheimer’s Disease International (ADI)

Alzheimer Europe and Alzheimer’s Disease International continue to have close working relations, with representatives of both organisations having met at several occasions in 1999. Thus ADI Chairperson, Nori Graham and the Executive Director, Elizabeth Rimmer paid a visit to Luxembourg and also attended the Alzheimer Europe conference in London, whereas Alzheimer Europe was represented at the ADI Conference in Johannesburg, South Africa in September 1999.

In order to further develop the existing relationship, both organisations are currently in the process of analysing possibilities to co-operate even more closely in the future.

European Federation of Neurological Societies (EFNS)

As a collaborating society of the European Federation of Neurological Societies, Alzheimer Europe became actively involved in the dialogue, which the EFNS has set up with various European lay organisations. This laudable initiative led to a lively discussion and an interesting exchange of information and experiences between representatives of patients’ and carers’ organisations and interested neurologists at the EFNS meeting in Lisbon in September 1999.

The lay organisations present at the meeting stressed the importance of further co-operation between their organisations in order to raise awareness of the different problems faced by people with neurological disorders. A task force, in which Alzheimer Europe is represented, was therefore set up in order to investigate the possibility of setting up a European Federation of Neurological Advocacy and present their findings at the next EFNS meeting in 2000.

European Platform of Social NGOs

In 1999, Alzheimer Europe also established first contacts with the European Platform of Social NGOs, a Federation of various non-profit organisations working in the social field (disability, equal opportunities, social exclusion, non-discrimination, health).

At the Platform meeting on 17 November 1999, Alzheimer Europe was accepted as a full member of the Platform and can thus participate in the campaigns organised by the Platform:

to promote civil dialogue in the European Union between the European institutions and civil society

to promote the role of European NGOs and to lobby for core-financing of representative European NGOs

to influence European policy in the fields of non-discrimination and equal opportunities.

European Federation of Pharmaceutical Industries and Associations (EFPIA)

Alzheimer Europe has actively participated in various meeting of the think tank set up by EFPIA bringing together representatives of industry and European patients’ organisations. This think tank allows the two sides to exchange views on European developments, which are of interest to both industry and patients, such as clinical trials, orphan drugs, the reform of the public health programmes of the European Commission and equality of access to care and treatment.

At the EFPIA Conference “Getting better: developing mechanisms to ensure the best benefit for patients from medical progress” in Brussels on 21 November 1999, Alzheimer Europe was able to contribute its views on how to best keep up to date with medical progress as patients and patients’ organisations.

Other Activities

As a matter of fact, it will be impossible to list all the activities which Alzheimer Europe developed in 1999, but this Annual Report would be incomplete without listing some of the other initiatives undertaken by the organisation in 1999.

Annual conference

One of the highlights of 1999 was undoubtedly constituted by the 9th Annual Conference of Alzheimer Europe, which took place from 30 June to 2 July in London and which marked at the same time the 20th Anniversary of the Alzheimer’s Society.

The conference entitled “A Meeting of Minds – Care and Science in Dementia” attracted over 600 participants (people with dementia, carers, care and health professionals, researchers and scientists), thus making it one of Europe’s biggest meetings on dementia in 1999. 106 papers were presented during the three-day event by 100 speakers from more than 15 countries.

The aim of the conference was to highlight the need for professionals and carers to work together in order to meet the challenges of dementia. As well as hearing from Europe’s most renowned scientists working in dementia research, “A meeting of minds” also covered a wide range of subjects within the field of dementia care, from spirituality and legal issues to quality of care.

Our heartfelt thanks go to Brian Roycroft and Harry Cayton, respectively Chairperson and Executive Director of the Alzheimer’s Society for their untiring efforts in making the conference another landmark in the already prolific area of dementia conferences.

1st Alzheimer Europe Forum in Brussels

On 17 March 1999, Alzheimer Europe organised its first multi-disciplinary Forum in the European Parliament bringing together carers, clinicians, regulatory authorities and representatives of the pharmaceutical industry in order to jointly discuss: “The future of Alzheimer’s disease and dementia in Europe – Hopes and fears about the development of anti-dementia drugs”

The meeting provided an excellent opportunity to hear the views of representatives from the European Parliament and the European Commission about the activities undertaken by the European Community in the important field of dementia care.

At the same time, the meeting served to introduce the work of the European Agency for the Evaluation of Medicinal Products (EMEA) and to provide an overview of the current and future trends in the development of anti-dementia drugs.

Finally, a round-table discussion centred on the perspectives of carers, clinicians and regulatory authorities about the development of anti-dementia drugs, whereas a second round-table allowed speakers to exchange their views on Alzheimer’s disease from a health economics perspective and the question of the reimbursement of drug-related costs in dementia.

The financial support of the pharmaceutical industry (Hoechst Marion Roussel, Janssen-Cilag and Pfizer Europe) was invaluable and we would like to thank them for their support which helped us to organise the meeting and to publish proceedings with the presentations of the different speakers.

Rules and Regulations

At the Annual General Meeting in Lucerne in May 1998, the new Statutes of the organisation were adopted, yet some of the articles needed further clarification and the Board was instructed to develop Rules and Regulations for these points.

Different drafts of these Rules and Regulations were discussed by the Board and the member organisations of Alzheimer Europe were fully consulted and asked to comment and to submit amendments if necessary.

Due to this extensive consultation process, the Rules and Regulations were unanimously adopted at the Annual General Meeting in London in July 1999.

These Rules and Regulations cover such different areas as:

The conditions for membership of the organisation

The representation of full member organisations

The election of the Board of Directors

The election of the Executive Committee

The termination of a Director’s appointment

Membership fees

The organisation of Alzheimer Europe conferences

The sponsorship by Alzheimer Europe

The co-operation with the pharmaceutical industry and other sponsors

The representation of Alzheimer Europe by its Board members.

Strategy for the third millennium

At the Annual General Meeting in Lucerne (May 1998), a reference document entitled “A Strategy for the third millennium” was presented and warmly welcomed by the member organisations of Alzheimer Europe.

Due to its far-reaching nature, it was nevertheless felt that it would be important to allow all member organisations to have an in-depth discussion of the different priorities set out in the document.

This consultation was carried out in 1999 and led to the final adoption of the document at the Annual general Meeting in London (July 1999).

The document can be divided into two main parts, the first one being a “Declaration of the needs and rights of people with dementia and their carers” and the second part enumerating the priority areas for the activities of Alzheimer Europe and its member organisations.